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Not Sure What To Do


Fri, December 27, 2019 6:17 PM

Hi All,
I'm a bit new still to having UC as I was diagnosed with ulcerative colitis in March of 2018, as I had been showing symptoms for 2 years but was told that it was internal hemorrhoids as I was "too young" for it to be anything else ". Since my hospital admission in mid October I have been on steroids due to a flare and each time
my steroid dose is lowered to ween me off my symptoms return. In addition to the steroids I take lailda . Currently my symptoms are manageable with me going no more than 3-4 times a day but at this point complete remission with the use is steroids doesn't seem likely and my doctor is strongly recommending entyvio infusions. I've expressed my concerns with my doctor about side effects and how this would effect my ability to have children and my
doctor had answered my questions but I'm still very weary to take this next step , especially because my flare seems to be much more controlled although I'm not fully in remission. Realistically I know I can't be on a sterioid forever especially with the heart palpitations  it causes and I know that I can't live with these symptoms occurring daily. Has anyone every taken entyvio? What has your experience been?  

FPO AEPPS16
Joined Dec 27, 2019

Sun, November 28, 2021 10:43 PM

Reply posted for charbs.

It's hard to know what to do when you are feeling lost, confused, or unsure. You might try looking at your past resumes planet events and the responses that you had. What made you feel good before? These are some of the things that I have found helpful in getting through tough times.

FPO Tinmainctu
Joined Nov 28, 2021

Sun, December 29, 2019 6:49 PM

Reply posted for AEPPS16.

I know it’s a side effect for remicade, but haven’t read it for Entyvio, but for the last year I have  had psoriasis on my arms and legs. The itching is terrible and once an episode clears up it starts over.   I have had psoriasis off and on since s a teenager but never as severe as this.

FPO charbs
Joined Oct 31, 2016

Sun, December 29, 2019 6:31 PM

Reply posted for AEPPS16.

I am also on cholestramine which seems to help. If you get it, make sure  you get the pill, not the powder. Sorry about the underline, it was a typing error.  If I haven’t mentioned, I had a proctocollectomy due to ulcerative colitis, then got Crohns. The Crohns is nasty, I’m fatigued all the time and always looking out for the nearest restroom, but it is not nearly as bad as the colitis was. I think some of that is not having a colon anymore. I used to barf up just about anything I ate but scrambled eggs, get fevers all the time and needed constant blood transfusions.  Don’t have that now.

FPO charbs
Joined Oct 31, 2016

Sat, December 28, 2019 10:07 PM

Reply posted for charbs.

See predisone has so many side
effects and my doctor tells me constantly we can't rely on them for
long. I was on 40mg for about two-three weeks and along with oral mesalamine and an enema . That worked for its time  but I've been on predisone for two months and I'm weening off because of the weight gain and heart palpitations and symptoms are returning but not as severe . If you don't kind me asking do yo I still use predisone for your flares since that's the only thing that's worked for you? Or have your tried alternatives?

FPO AEPPS16
Joined Dec 27, 2019

Sat, December 28, 2019 9:16 PM

Reply posted for AEPPS16.

Prednisone was the only thing that worked for my colitis. Was on 40 mg per day for too long. Got cataracts, weight gain, osteoporosis and when I weaned myself off it I broke out in hives, head to toe.

FPO charbs
Joined Oct 31, 2016

Sat, December 28, 2019 9:12 PM

Reply posted for AEPPS16.

Two or three years. Every eight weeks.

FPO charbs
Joined Oct 31, 2016

Sat, December 28, 2019 1:59 PM

Reply posted for charbs.

Thank you for responding . I'm sorry to hear about your experience . If you don't mind me asking how many entyvio infusions have you has so far ? 

FPO AEPPS16
Joined Dec 27, 2019

Sat, December 28, 2019 12:35 PM

Reply posted for AEPPS16.

I’m on Entyvio and I can’t see it doing me a darn bit of good. Was on remicade before that and it did nothing for me either.  

FPO charbs
Joined Oct 31, 2016

Sat, December 28, 2019 12:35 PM

Reply posted for AEPPS16.

I’m on Entyvio and I can’t see it doing me a darn bit of good. Was on remicade before that and it did nothing for me either.  

FPO charbs
Joined Oct 31, 2016

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